Continuity and change in loneliness and stress during the COVID‐19 pandemic: A longitudinal study of autistic and non‐autistic adults

Abstract

Previous studies have suggested that autistic adults may be negatively affected by the COVID‐19 pandemic and its associated restrictions. In this study, we examined continuity and change in loneliness and stress, and their predictors, in 448 autistic and 70 non‐autistic adults living in the Netherlands. Autistic participants were assessed on three occasions using the de Jong Gierveld Loneliness Scale and Perceived Stress Scale (pre‐lockdown (T0), first lockdown (T1), and second lockdown (T2)); non‐autistic participants were assessed twice (T1 and T2). Autistic adults' loneliness and stress levels remained stable across all three time points over 8 months, but were consistently higher than those of non‐autistic adults. Other predictors of higher loneliness and stress levels at the first lockdown (T1) included low perceived social support and high levels of COVID‐19 related worries. Although loneliness and stress were stable at the group level, the wellbeing of some autistic adults worsened over the course of the pandemic, while others improved. For instance, adults with a mental health diagnosis (other than autism) prior to the pandemic were more likely to increase in stress over time, whereas adults with higher perceived social support were more likely to decrease in stress over time (from T1 to T2). Factors contributing to variability in outcome require further examination. Moreover, the relatively high loneliness and stress levels in autistic adults call for attention from clinicians and service providers. Lay summary In our study, autistic adults reported feeling more lonely and stressed than non‐autistic adults during the COVID‐19 pandemic. People who missed support from their social network also felt more lonely and stressed. On average, people did not change substantially in their degree of loneliness or stress over time. Yet, we noted large person‐to‐person differences in the wellbeing of autistic adults during the pandemic.

Impact of the COVID-19 Pandemic on Autistic Adults: a Scoping Review

“…Unsurprisingly, some of these studies also reported substantial differences within individuals , with some Autistic adults experiencing both positive and negative effects of the stay-at-home orders at different points during the pandemic [ 27 , 44 ••, 46 , 52 ••, 53 ]. This latter finding might provide one explanation for the apparent stability in psychological wellbeing reported by several prospective, quantitative studies [ 47 •, 48 , 49 ]. Another possibility is that such stability is driven more by the consistently deeply unsatisfactory quality of life and poor mental health experienced by many Autistic adults pre-pandemic (see [ 14 ], for review) than the impact of the pandemic itself.…”

“…Only 10 (31%) studies were prospective, where the wellbeing of Autistic adults was assessed repeatedly over time. These prospective studies revealed mixed experiences, demonstrating either overall stability of psychopathology symptoms, loneliness and stress in Autistic adults during the first months of the pandemic [ 47 •, 48 , 49 ], an overall decrease in psychopathology symptoms [ 44 ••] or an increase in acute psychiatric distress, as evidenced by increased psychiatric emergency admissions of Autistic adults before and during lockdown [ 50 ].…”

“…Many studies identified individual characteristics that were reportedly predictive of better mental health in Autistic adults during the pandemic, including being male gender/sex [ 47 •, 49 ], older [ 47 •, 48 ], having relatively good mental health prior to the pandemic [ 44 ••, 47 •, 48 , 49 ], low COVID-19-related stress [ 27 , 48 , 49 ], high perceived social support [ 46 , 48 , 52 ••] and being able to maintain routines or develop new ones [ 44 ••, 52 ••, 54 ]. Caution is warranted, however, as these effects (particularly regarding gender/sex and age) were not consistently replicated [ 44 ••, 48 ].…”

“…This finding challenges prevailing stereotypes of autism — that is, that Autistic people prefer a life of self-isolation. In future, more concerted efforts, ideally led by Autistic-led organisations, must be made to implement and maintain social support structures for the Autistic community [ 46 , 48 ], especially during times when social supports are otherwise curtailed.…”

Long-term impact of resilience and extraversion on psychological distress during the COVID-19 pandemic: a longitudinal investigation among individuals with and without mental health disorders

“…Scheeren et al. ( 65 ), for example, observed consistent levels of psychological distress among both autistic and non-autistic adults, and a representative study from Austria reported that the number of study participants out of the general population with clinically relevant symptoms remained unchanged from April to September 2020 ( 66 ). Investigating another sample in Austria, Oppenauer et al.…”